Slowly But Surely

You know it's time for an update when I have to read my last update just to see what I've missed!

Callista has been doing extremely well after her decompression surgery. Overall she seems like she just feels better. We're still working on swallowing and of course that will lead to working on eating, but I think we're getting there. We were scared that we'd have a set back because she has ANOTHER freaking UTI. But she's handling it like a champ. She's been on antibiotics for a few days now. She's a little cranky but at least is hasn't put us back any further. The biggest news to report is that yesterday Callista actually sucked on her binkie repeatedly... This is the first time she's done it in about 6 weeks. And the best part is that she did it in front of the nurse so there's documented proof that it happened. My little one is famous for doing NOTHING for her therapists and then as soon as they walk out of the room, she does exactly what they wanted her to do.

They informed us about a week ago that they'd give her two weeks to eat on her own and then we'd revisit the G tube idea. We were okay with that since we certainly don't want to spend our whole lives in the NICU waiting on her to eat by mouth. Two weeks seemed like a good timeline. Then today they tried to tell us they were consulting the feeding specialists because her two weeks were up. Of course, I was like what the hell? We were told two weeks of therapy, not two weeks after surgery. So we vetoed that pretty quickly and now she has all of next week to get OT and improve. There's still a huge chance we end up with a G tube but I'm going to do everything I can for her before I agree to it, including giving the poor kid a chance! We feel very much pressured into just getting the tube, which I'm not to thrilled about. And I'm sure they are not too thrilled about the fact that I'm very assertive about my parental rights lol. The longer we spend in there, the less patience I have with them trying to tell me what THEY think.

Since she is handling her secretions well now (little to no suctioning, woo!!!) we've been trying to lay her on her back with her head midline and she wants none of that. Even after explaining to her that she will have a cone head, she still fights every minute of it ;) We've been trying to get tummy time in (hard to do at the hospital) and she seems to be enjoying it MUCH more now than when we tried at home. She's still not strong enough to hold up her heavy head but her neck muscles are getting stronger daily. Sometimes I feel down about the fact that we're not meeting milestones like a "normal" baby, but then I think about it and realize it's not that she won't meet them, it's just that she'll meet them on her own schedule. We've got a great PT and OT while she's hospitalized and I'm so thankful for that.

My work has also struck a deal with me that gets me a few more weeks of leave. I now have to go back on the 30th instead of the 16th which is a huge stress relief for me. I swear I was getting an ulcer just thinking about it. So for now that worry is on the back burner. I hope and pray we've got things figured out before then!!

And to end on an extremely positive note, Callie has really started to blossom personality-wise. She smiles more often and lets out the most adorable giggles, especially when she's sleeping. She's discovered that she LOVES Grandpa K's hat and finds it immensely entertaining to stare at. She has started feeling things and likes the texture of wash cloths. She has discovered that she can flail her arms and legs to deter you if she feels you're doing something to her she does not like (eg: dressing her, changing her diaper, or fixing her blanket).  And she's still got her attitude problem of holding her breath when she gets incredibly angry or hurt (IV team hates that!). That's about the only thing she does that is SO NOT CUTE. Everything else is just amazingly adorable ;)